- Jess Evans and fiance Mike Houlston decided to donate baby son's organs
- Teddy died 100 minutes after birth from anencephaly, a rare, fatal condition
- Couple chose to donate his kidneys and heart valves to save others' lives
- They said their son 'lived and died a hero' and hope to now inspire others
The parents of Britain's youngest ever organ donor have revealed how they made the heartbreaking decision to donate their son's kidneys and heart valves after he died less than two hours after being born.
Jess Evans, 28, was 12 weeks' pregnant with twins when she was told one of the sons she was carrying had a rare and fatal condition which prevents the brain and skull developing.
Ms Evans and her fiance Mike Houlston, 30, from Cardiff, Wales, were told their baby – who they named Teddy - would either be stillborn or pass away very shortly after birth.
However, the couple were determined that their son's life would be remembered and decided to allow his kidneys and heart valves to be donated so he could save the lives of others.
Jess Evans, 28, and her fiance Mike Houlston, 30, from Cardiff, described their son Teddy as a 'hero' after deciding to donate his organs when he died 100 minutes after being born. Pictured above: Teddy's JustGiving page which the couple have launched in his honour to try and raise money for charity 2 Wish Upon A Star
So, when he died just 100 minutes after being born 12 months ago, the couple agreed to allow his organs to be transplanted into an adult patient with kidney failure.
It saved the other patient's life and the couple have hailed their son – whose twin brother Noah is now a healthy one-year-old – a 'hero'.
Mr Houlston, a housing surveyor, told the Daily Mirror: 'He lived and died a hero. It's impossible to explain how proud we are of him.'
Ms Evans added: 'Although he wasn't with us very long, and we brought him into the world knowing there was no hope of a life for him, we are incredibly proud of his heroism.
'We hope Teddy's story will inspire families who find themselves in the position of losing a child. Knowing part of your loved one is living on in someone else is comforting.'
Ms Evans gave birth to Noah first before his twin Teddy on April 22 last year. The couple, who also have a three-year-old daughter called Billie, decided to name the boys after each other: Teddy Noah Houlston and Noah Teddy Houlston.
While Noah was a healthy baby boy, Teddy was born with a rare brain condition called anencephaly, which occurs in the early stages of pregnancy and stops the neural tube folding over to form the brain and spinal cord of the fetus.
It means the baby is missing a large portion of the brain, skull and scalp and those born with the condition are usually blind, deaf, unconscious and unable to feel pain.
They are also likely to be either stillborn or survive just a matter of hours or days.
Ms Evans and Mr Houlston, who were childhood sweethearts before rekindling their relationship in their 20s, said they were over the moon to discover they were expecting following a trip to Amsterdam, during which they got engaged.
However, they said discovering that one of their sons would not survive was soul destroying. They were offered the option to abort, but never considered it.
Ms Evans said: 'We thought even if we had a moment with him, or 10 minutes, or an hour, that time was the most precious thing we would ever experience.'
Ms Evans and Mr Houlston have shared their story - and set up social media profiles in Teddy's name (left) in a bid to encourage others to consider organ donation (right) and to raise money for '2 Wish Upon A Star'
The Twitter profile of Teddy posted this message yesterday, which wished the twin boys a happy birthday
They decided they wanted their baby to help someone in need of a transplant.
Ms Evans said: 'It helps us so much to know he has helped someone else and helped doctors realise donation from small babies is possible and is something people like us want to make happen.'
The couple’s decision to donate Teddy’s organs following his death last year made him the country’s youngest organ donor. The previous youngest donor was a five-day-old girl who was never publicly identified.
It is incredibly rare for newborns to be considered as donors and Dr Paul Murphy, of NHS Blood and Transplant, described Teddy's donation as 'exceptional'.
He said: 'Every donation is inspirational. It is a selfless act of heroism.
'But Teddy's story is exceptional. He was the youngest organ donor in the UK.'
Ms Evans and Mr Houlston have now set up a JustGiving page in Teddy's honour to raise money for the charity, 2 Wish Upon A Star.
On the page, they encourage people to help raise money for the charity which aims to improve bereavement services for parents who lose babies or young children.
They say: ‘Teddy Noah Houlston became an organ donor in the UK on 22nd April 2014.
‘He was born with a condition called anencephaly, a terminal disability which meant Teddy was only with us for a very short period but in that time he was the perfect son, an inspirational brother to his twin Noah Teddy Houlston and a hero to his big sister Billie Grace.
‘Teddy’s journey has just began (sic), it is a never ending journey raising awareness about the importance of becoming an organ [donor] by spreading the word that giving the gift of life really is the most precious gift anybody could receive.’
Click here to donate to Teddy's JustGiving page or for more information.
WHAT IS ANENCEPHALY? RARE BRAIN CONDITION WHICH AFFECTS BABIES
Anencephaly occurs between the third and fourth weeks of pregnancy.
During that time, the neural tube is supposed to close and fold over to form the brain and spinal cord of the fetus.
This process fails to occur in anencephalic pregnancies, resulting in the absence of a large portion of the brain, skull and scalp.
Babies born with anencephaly are usually blind, deaf, unconscious and unable to feel pain.
They are usually stillborn but in rare cases they may survive longer.
The rate of anencephaly is one or two per 10,000 births.
A baby with anencephaly lacks the telencephalon, which is the part of the brain responsible for cognition